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The Success of the Journey of Hope

David Bond – FVBTC President

When I started out in the world of brain tumors in May of 2000, I admit my experience was purely professional. I had just been hired by the man I consider to be the greatest neurosurgeon of his time, Dr. Thomas Wascher. It was his desire to have a support group for his brain tumor patients, and my desire to impress my new boss, that led to the creation of this group. As many of you know, we started humbly with just 12 people at our first gathering. We now are the largest brain tumor support group of any I have found.

While I was happy with the progress we were making as a support group, everything changed in the Spring of 2002, when I attended a national conference and saw information about the National Brain Tumor Foundation’s “Angel Adventure.” I spoke with the staff from the NBTF at the conference and realized that no event had ever been held outside of the San Francisco Bay area. I offered to change that! Knowing nothing about fund raising, I committed to hold an Angel Adventure just a few months later. In September of 2002 we held our first Angel Adventure on the grounds of Thrivent Financial. 350 people came out that day, and we raised over $100,000. We broke every record from any previous Angel Adventure. In 2003, we held our second Angel Adventure, now with over 400 people, again raising nearly $100,000.

Unfortunately, we realized that the funds we were raising were not really directly impacting those in the Fox Valley suffering from brain tumors. I offered to change that! In late 2003 we incorporated into a 501c3 non-profit organization and officially became known as the Fox Valley Brain Tumor Coalition. Inspired by a quilt hand-made and presented to Dr. Wascher by Helen Heise, we centered our work around Hope. The Journey of Hope began in 2004, with much of the same volunteers that had worked on the Angel Adventures. Now, however, we were able to assure our generous community of corporate and individual donors that the money they shared would in fact all be kept local, and that ALL of that money would go directly to help that patients.

We wrote into our bylaws that we must remain a volunteer-run organization. We have had, and will have, no paid members. We have kept the process personal and respectful. If you need financial assistance, you get it. We do not ask for financial information, we do not do credit checks. We do not believe that is our place in this process. I can tell you that after more than a decade of running this group, that process has never once been abused. Inherently, people are humble, and the “pay-it-forward” idea is part of what keeps this group running so strongly after all of these years.

So there’s your history lesson…how we came to be. We have raised over one million dollars since we started, and have helped so many families eliminate their medical debt related to their brain tumors. There is no other group like this in the country. And yes, I am proud of what we have done and how we do it.

I have been fortunate to receive many congratulations and thank you’s over the years. In 2015 I even won the “Healthcare Volunteer of the Year” award. Every year at the Journey of Hope I have countless people thank me for my work. My parents, my wife, my kids all tell me how proud they are. I appreciate that, but I usually answer these compliments with an attempt to share the credit. People seem to mistake that response for me just being humble. However, this is why I am writing this letter. I need you all to know that I do not deserve the praise for these efforts. You see, there is a miracle at play here. I know it is real, and I have seen that miracle grow for nearly 15 years.

The miracle is the people. Let me explain. In no particular order, let me introduce you to some incredible people, as seen through my eyes.

Julie Wurl
Julie and I have worked together for over 20 years. We met at AMC when we were both much younger, but she has always had that “can do” attitude. She has an energy and passion that is better than a cup of coffee. She will make you smile about a stressful situation no matter how much you don’t want to. Julie’s work at the Cancer Center and at NeuroSpine has provided her with an opportunity to meet and really get to know so many brain tumor patients over the years. When she worked in scheduling, the time she spent with the patients setting up an MRI and follow up visit was her opportunity to connect and befriend the patients and their families. With a scary-good memory, Julie is my go to if I can’t remember when someone was diagnosed, had surgery, radiation, etc. She has a gift. I don’t know many people who can keep up with her. She works at NeuroSpine full time, Thedacare part-time, and goes to school. She still fits in time for volleyball and numerous other charities! Julie has always been active in the FVBTC, and has attended as many support group meetings as she can. She is now a Board Member. Julie handles the registration for the Journey of Hope. This means that she personally organizes two mass mailings for registration forms every spring and summer, tracks the online registrations, gets me the t shirt count for our order, organizes the pre-registered walkers, handles the onsite registration, counts all the money brought in online, in person, and so much more. We would be stopped in our tracks without her work. Why does she do this? I think Julie is simply a generous, giving, caring woman deep down to her core. She truly cares about the patients. It’s just who she is. I am proud to consider her my friend, and am so appreciative of her work.

Brian Burns
Brian lost his brother Dean to a glioblastoma many years ago. While most survivors tend to find other areas in life on which to focus, Brian has deemed this group worth his efforts, and I am so glad he has! Brian very kindly shook his head at me when I was sending out single pieces of paper with the date and time of our support group meetings to remind people when we met. He initially transformed that into a newsletter with real information on it that we mailed out monthly. As he learned more about web design, he then built our website www.fvbtc.org and brought us into the modern age. For years he has maintained the web page, adding features as we need them, and has plans for so much more. Web design is Greek to me, and without Brian we would be back to a single piece of paper. Brian continues to attend most support group meetings, listening for anything that members might need added to the site. Brian is also a Board Member, and is our audio man at the Journey of Hope. Why does he do it? I believe his work is a great ongoing tribute to his brother. I think he has shown his daughter, Carly (who attends and helps at every Journey of Hope), how to honor family. I am impressed with Brian’s knowledge and dedication.

Penny Boehlen
Penny lost her husband Bob to a GBM many years ago. She and Bob were at the very first support group meeting, shortly after he was diagnosed. I consider Bob a friend, and Penny has become family to me. Penny had the purest of hearts. She thinks of others first and lives her life as a tribute to Bob. He would be so proud of her. A founding Board Member of the FVBTC, Penny was our treasurer for many years, and ran the silent auction at the Journey of Hope for many years. Recently Penny decided it was time to focus on some important goals, which I fully support. She is still on the board, but lives in Door County over the summer and is less involved than she has been in the past. I need her to know how proud I am that she is following these dreams. I relied so heavily on Penny for many years to help me with this group, and I will always be grateful. I think she honored Bob in a very special way with her efforts here, and I think she is honoring him again now by pursuing happiness.

Amy Budd
Amy lost her husband Jeremiah to a GBM. She is one of my favorite love stories, as she and Mike (who lost his wife Darcie to a GBM) are now married and expanding their beautiful family. Amy is a Board Member and has helped with corporate sponsorship and networking. Amy and Mike inspire me when this experience gets tough. Good will come.

Lisa Spanbauer Christman
Lisa is a dear friend, and is one of my wife’s best friends. When Penny decided to move on from her position as treasurer, Lisa, who is also a CPA, stepped up. Now a Board Member, Lisa gives of her self to make sure that we are financially “smart”. She is developed friendships within this group and is now connected at a personal level. We are so fortunate to have her share her abilities.

Lisa McAllister
Everyone knows Lisa. She is one of our front desk ladies at NeuroSpine, and has been helping with the Journey of Hope from day one. She has been extremely active in soliciting donations from local business and people. Lisa knows all of the right people and is able to bring in some incredible silent auction items every year. She has also been one of the main forces behind feeding everyone at the walk. Every year she secures the food, desserts, etc. She loves this group, and she worries like a mom every year. “I don’t think we have as many auction items this year!” “Are we going to have enough desserts?” “We need more subs!” “Maybe we should get some chips!” She worries enough that I don’t have to. She cries every year. She cares that much. She cries for the loss of the patients she has gotten to know, and the friends she has made. She cries because she is honored to be a part of this experience. Incredible. A couple of years ago, Lisa explained to me that she would no longer be able to be on the planning committee due to other obligations. So now she basically does everything she used to, plus she builds the “Scratch off Tree” that brings in lots of $$ every year. Lisa is great at planning a party, but not so good at retiring. Thank God. Lisa is a passionate and caring woman, and I can’t imagine a Journey of Hope without her. Thank you Lisa!

Kelly Neuman
Kelly knows everybody. Seriously. This woman can network. Needs t shirts? She knows a lady. Need water? Gotcha covered. And you can’t say no to her. Kelly and Lisa are my dynamic duo. While Lisa might be my worrier, Kelly balances it out with an “it will be fine” attitude. She knows how everything flows for the Walk, and covers a lot of the detail work I might otherwise overlook. She is so connected with the patients and their families. I don’t know if everyone understands and appreciates how much of herself she puts into her efforts with this group. Kelly has been there since the beginning, and the Journey of Hope is a success because of her passion. Every year she thinks of how to make next year bigger and better. Thank you Kelly!

Cate Hella
Cate’s mom, Patti, has a brain tumor. Cate took over the silent auction when Penny retired. Coming in to initially help, she kind of inherited the whole thing. Listening carefully to what worked and what didn’t, Cate revised the process into something that I really appreciate. Honestly, I have no stress over that part of the day, due entirely to Cate’s “I’ve got this” attitude. The silent auction is our biggest money generator at the walk, and she handles it with confidence. Aside from the work throughout the year soliciting donations, Cate actually takes vacation time the week of the walk to come in and get everything ready. She organizes all of the items, oversees the auction, makes sure everyone gets what they paid for AND sends out thank you notes to all of the donors. You have no idea how much time this all takes. Why does Cate do it? For her mom. What a great daughter.

Bernie and Darlene Hengels
Bernie and Darlene are a pair. He’s the driver, comedian, cheerleader. She’s the brain tumor patient who has turned something rotten into something awesome. I have never met a couple more involved in charity. It would be challenging to attend a charity event in the Fox Valley without seeing these two working some part of it. Darlene is our marketing team. She writes for the Post Crescent, and somehow is able to include the FVBTC in just about anything she writes about. She is the reason Bill Jartz came down to help us. Darlene and Bernie are our ambassadors for the group. They travel all around the Fox Valley educating people about what we do, volunteering on behalf of the group at concerts, bike rallies, etc. These are good people. I am honored to work with them and call them friends.

Lisa Hanneman
Lisa has been helping for a few years now with fund raising for the Journey of Hope. She is very organized (and keeps me organized). Her son is being treated for a brain tumor, and I like to think they both have been helped by her involvement with our group. We have certainly benefited from her efforts. Thank you Lisa.

Patty and Steve Jones
Patti and her husband Steve have been huge supporters of the Journey of Hope for years. Steve would grill our food, solicit food donations, water, etc. He was always there to help set up and tear down. Patty was our food captain for years. There were years when we had 1250 walkers and Patty made sure we had everything we needed to feed them all. Sadly, Steve suffered a severe stroke and they are no longer able to participate like they used to. But in my mind, they are forever part of what we do. Thank you both for everything.

Kim, Rich and Lexi Kobishop
Kim was my neighbor for years, and she and her family are like family to us. For years Kim has solicited donations for the silent auction and volunteered for the walk. She comes in to set up, and works the jewelry table during the Journey of Hope. Her daughter Lexi is always there helping, even coming home from college just for the event. Rich helps us from a corporate donation side, and with set up. Thank you all. You are a wonderful family.

Heather, Rich, Regan, and Payten Gueller
Rich is one of my closet friends. He thinks like I do and works like I do. He enjoys charity. Not only does he support the Journey of Hope from a corporate standpoint, he rushes back every year from an out-of-town annual conference to help set up the tables and chairs. He won’t leave until the work is done. Rich and Heather have set a great example for their children. Regan was just 4 when she first attended the walk, Payten was 3. Now they are 13 and 12, and when they show up to volunteer they know exactly what to do, what goes where and they get it done. They are great workers, and it has been fun to watch them grow in their efforts with charity. Heather is a dear friend, and we have been through a lot together. While Heather has always supported the Journey of hope because of our friendship, she never thought it would hit so close to home. Sadly, her father suffered from metastatic lung cancer that spread to his brain. He lost his battle in 2013. I am honored to have known and cared for Ken. Heather delivered a beautiful speech in his honor at the 2014 Journey of Hope. The walk will forever have a far deeper effect on Heather and her family, and I am pleased that the group that she and her family supported for years can now offer her support.

Mitch
Todd Mitchell, known by most as “Mitch”, shares his vocal talents with us every year, just celebrating his 5th event. If you’ve been to the Journey of Hope, you know how touching this story is. For years, Jim Stumpf, and incredible man who fought a malignant brain tumor for years, finally succumbing to a second type of cancer, sang at the walk. Now, Jim was not necessarily a vocalist. He sang You Raise Me Up every year, and he sang from his heart. His last year with us, Jim was too weak to sing. We were told he wasn’t even going to be able to come to the walk. A close friend of the Wascher’s, Mitch had performed this same song for both of his parents’ funerals. He stepped up and offered to fill in for Jim. It wasn’t until Mitch was about to sing that we realized that Jim was in fact in the crowd. Mitch brought him right up front and sang in his honor. There was not a dry eye that day. Mitch sang again that same song just a few months later at Jim’s funeral. They have been connected ever since. Now five years later, Mitch still comes and sings for us, for Jim, and for his family. Before he takes the microphone he looks for Jim’s family and delivers a hug after the song. How does a man with no previous connection to brain tumors get so deeply involved? Just like that. Mitch, you make the ceremony so special. Thank you to you and to Jim for this gift.

Bill Jartz
I have to admit, Bill has become one of my favorite people. I can’t claim to know him well, as I have met him only 3 times. Once for each of the last three years that he has come to emcee the Journey of Hope. Do you realize he is involved with nearly 90 charity events a year? I amazed by his efforts in this community. I am amazed at his connection with our group. He is a very genuine man who connects with people in a magical way. Bill, you can’t know how you have changed the day for me. I am free to do what I do best, and that is NOT running the microphone. I was always torn between running the day, literally running from one end of the tent to the other, talking with people, and keeping the microphone going. My live auction attempts were embarrassing. Now, Bill has transformed the day. I enjoy the morning and can connect with people!. Bill will sing and march out the UW fight song just to get a bid up another $20. God Bless you Bill. You are a true hero, and I am blessed to have earned your interest.

Brian Stedl, owner of Nu Terra
Brian has been providing our online registration site, www.journeyofhopewalk.com for a few years now. He has done this for us without charge out of the kindness of his heart. Brian knows a good cause when he sees it, and we really appreciate not only his charitable service, but the kindness in which he provides that service. Thank you to Brian and his team.

Jane Villenueve
Jane has really taken to our group, and though she is not able to come as often as she would like, she has always been a big cheerleader for us. Every year you see her at the walk with her birdhouses and stepping stones that she makes by hand. Thank you, Jane, for your dedication!

The Rockmans
My sister, Vicky, and her family have been a huge support to the Journey of Hope over the years. They are an incredibly talented and therefore busy family. Vicky does everything she can to arrange at least a few of the Rockman clan (and sometimes a friend or two) to come help. She and her family have run the Make Your Own Jewelry table and this year they did face painting. I really do appreciate your love and support, and thank you for always being here. I love you all!

NeuroSpine Center of WI Doctors
The doctors at NeuroSpine have been our premier sponsor every year, including the two Angel Adventures. The money is extremely generous and very much appreciated. But the true gift is in their understanding that many of the employees at the office work hard to make this a success, and are able to do so knowing that they have the support from the doctors. That means the world to us. Thank you all.

NeuroSpine Center of WI Family
I have picked out a few of the people that have stood out over the years, but there are so many that have been there from the beginning. I watched Pam Verkuilen and her daughters for many years stop out to set up in the morning, run to a competition, and then come back to clean up! We miss the girls now that they are grown and moved away, but their efforts are appreciated. So many come the day of the event to help. Dr. Revord, Pat, Jane, Shelly, Cindy, Sarah, and many others. Thank you all for your dedication!

Tom and Pamela Wascher
Dr. Wascher was the spark that started this whole effort. Without his desire to provide more for his patients this would not have happened. Without his validation, support and compassion, it would not have survived. Tom, you are a special doctor. Those who have treated with you know you as a wise and skilled surgeon. I know you as a man who has a belief in God, who gave you abilities that are yours to use with His wisdom and direction. You make always make decisions with the best interest of the patient and their family at heart. I watch you suffer when your patients suffer and celebrate when they have victories. You put your entire self into being a doctor. I am honored to have built this with you, and to call you my friend. Thank you for your respect and friendship.

Pamela is Tom’s wife, and my close friend. She shares in the highs and the lows that Tom and I experience in this role. She truly cares. You will always find a tear in Pamela’s eyes when we lose a brain tumor patient. She is involved in the fund raising and success of this group and has been from day one. Pamela understands the importance of the work we are doing through the Coalition. As one of our biggest financial supporters, Tom and Pamela have invested their hearts into the success of this group. Thank you, Pamela, for your caring and support. It means so much.

My incredible wife, Diane
Diane is my best friend. She has been with me for 24 years and has been my biggest fan. Knowing I am one to jump all in on a project, she knows when to jump in with me or when to stay on solid ground and pull me out from a bad idea. Her work with the Coalition has been to support me, and she has developed relationships with patients and their families through this work. I am so proud of Diane and her kind heart. She is the kindest, most honest and loving person I know. I enjoy working with you in this charity and all that we do. I love you.

My daughter Paige
Paige was just 4 years old at the first Angel Adventure. She is now a sophomore in college with a better head on her shoulders than I had at 30. She has been actively involved in the committee planning all through high school. She volunteered to watch the children during the monthly support group meetings and still comes back from college to help with the Journey of Hope. She has chosen a career in medicine and is pursuing PA school in the near future. While I know she would do well in any chosen vocation, I believe she has a gift to share with people, and am excited to watch her grow. I love you Paige, and I am so proud.

My daughter Alaina
Alaina was not quite 2 years old at the first walk. She grew up in this world, always being affected by this disease. Alaina has developed into an incredible young lady with a faith in God that impresses me to no end. Now a sophomore in high school, she is active in helping with the walk as well. She and her friends made a good showing this year as volunteers! Alaina has also developed relationships with many patients and families. I am so proud of her desire to jump in and help in any way needed. I am very proud of you. I love you.

Fr. Martin Carr
Fr. Carr was my friend, and he called me his brother. He is the inspiration for the way the Coalition is set up. No forms, no credit checks, no begging. Just respect between people and help to all who ask. It worked for him for decades. It works for us.

The patients and the families
You are all the reason I do this. You inspire me, and energize me. Please know that I would take this disease away if I could. But in the meantime, I will make your journey better that it would be if I wasn’t there. That is the absolute best I can do.

So there you have it. The Miracle that is the Journey of Hope. My hope is that when you read this you understand how very little of this is me, and how much is your community, friends and family. I appreciate the compliments. It means we are doing the right thing and doing it well. But I do admit that every year on the Saturday after Labor Day I am amazed at the true miracle of all of you. Thank you for making it great. I am honored to be a part of it.